Let's talk turkey

Remember how wringy-of-hands I was in that last post? Almost acting like a Boo Hoo Baby (My and T's name of choice for the other person when we're being a willie about something). Well! Yet again my daughter brings It like it's her motherscratching JOB.

• She walked in like it was no issue that it was a new setting.
• She is playing with the other kids like they're her friends from school.
• She has not clung to us and she is calm and not distressed in the least.
• She likes her tiny room (that we're not in very much) and will frequently pop in to grab her beloved kitty and/or take a hit off the blankie.
• She has responded to all of the therapists with zero wariness and fear.
• Despite the new setting and arrangements, she gave such an accurate baseline of acceptance and refusal of foods that her treatment (they call it "protocol") began today.
• She took a nap in the room, in the bed (!) yesterday.
• We went home today for lunch and nap, and the transition back to the clinic setting for her afternoon session was a non-issue.
• She has made crafts and done puzzles and watched a movie and played ball and made hearty use of the train table.

And with all of this goodness, it is even better and smoother than I thought. We can leave if we're not expected for a meeting or feeding time. And being only five minutes from home, today we went home for some quiet and lunch for us and a nap for Iris. I can even run to the store or Target or the dry-cleaners or the park, if we want. Our schedule for each day is firm and was given to us ahead of time.

They have "child life specialists" who are there Monday through Wednesday and who do crafts and games and interact with the kids. These people?--one staff member and one volunteer--are WONDERFUL. The volunteer has been with the hospital in pediatrics for 15 years and is a retired third grade teacher and is pretty much like the fabulous grandma we all want. There are a lot of different types of kids in this program and who have a variety of needs and she is kind and warm with all of them. I want to hug her. The staff member is delightful and sunny and engages the kids but is not pushy.  It's dreamypants.

All of the parents and two grandparents there with their small people introduced themselves to us within the first few hours of being there. With the families currently there, it seems very communal and kind. 

And at the risk of seeming all ponies and rainbows, T and I did go home last night with our clocks cleaned. We may have eaten a lot of dinner and we may have had a smallish, tersely worded and very confusing fight (Do you ever have these? For I could NOT EVEN tell you now what we were discussing that caused me to get into a tizzy...) that dissipated with some sleep.  I may have also dropped an eff bomb upon waking at 5:30am because the thought of being at the clinic all day and then at work from 5:00pm to 9:00pm seemed...less than ideal. But even with all that, I am happy and at peace about all of this. 

One last thing I want to admit, while loading the dishwasher last night and kind of basking in the smoothness of the day--it hit me: for the first time, I feel as if we've been given a Pass on something that could've been enormously hard and heart distressing. Everything about Iris' birth and development has seemed like that; blow after blow after blow. Always hard work. Always a challenge to conquer and overcome. Always something new to consider about what might be awaiting her. But here? Here is something that could've been that--and really may still be--but instead has been full of peace and ease. 

Finally, I think. Finally.

NPO is for suckas

So the feeding clinic starts tomorrow.

After the initial elation of her finally getting in the program settled down and we figured out the logistics of it all with work and home, T and I promptly developed nervous tummy. 

We're nervous because we don't know what their plan for her will be. We're nervous because the exact structure of the day is uncertain. We're nervous because we don't know how she'll respond to new people, new treatment location, new treatment regimen. I'm nervous because I think she will most certainly not nap there (but she's already kinda proving that a mid-day nap is for wienies anyway). I'm nervous about training her teachers at school on what will be her new "normal" for eating. I'm nervous about her first day back to school in eight weeks and what that drop-off will be like and that whole transition. 

So yeah.

Last week Thursday, I had a long talk with the doctor in charge of the program and she answered so many of my questions. The low down:

Basically, Iris will have three, 45 minute feeding sessions at 8:45am, 11:45am and 2:45pm. They'll weigh her each or every other day so that as they're weaning her tube feeding amounts, her weight can be closely monitored. This program, unlike others, doesn't check blood sugar levels so at least she won't be finger or heel-pricked on the regular.

The first week is where the plan kind of comes together. On Day One, T and I feed her at each of the feeding times and the team (SLP, OT, program director) watch behind the one-way mirror. On Day Two, they feed her (with us now behind the mirror) the same foods from Day One to get a sort of combined baseline. On Day Three, the team and T and I evaluate everything that they and we saw and create a plan based on what we think is realistic for her. The following feeding sessions after that take place without us in the room, but watching behind the mirror. Periodically they will bring us in, but we do our work in the evenings at dinner and on the weekends.

The time between the feeding sessions is kind of ours to fill. They have an outdoor play area and an indoor play area, both of which are good sized. A tv and a train table and lots of toys. A small kitchen for us to use and we've been giving a napping room. There are only eight kids in the program at a time, and they have four or five napping rooms. It has a twin bed with a rail and locking cabinet and a cushy chair. So even if she doesn't sleep, at least we can lounge with her with her and watch Winnie the Pooh and have quiet time.

They organize art projects and other activities and, overall, the program director said that structure--although, left up to the families to determine what works best--is highly encouraged. We'll be there every day, Monday through Friday from 8:00am/8:30am to 4:30pm or so.

Intense, but I guess that's why they call it the intensive feeding clinic. 

T and I agree that our bottom line goal is get her off her tube (or "special tummy tube" as Ezra has starting calling it) and the director thought this was entirely reasonable. That, once evaluated, the primary focus could then be on getting her to drink liquids, most importantly her formula. Secondary plan might then be on getting her to manage a variety of textures of purees--not baby food, but roughly blended table foods--and managing those in her mouth with chewing and successful swallowing. 

So now you know as much I know. Honestly. That's all I got. 

We shall see how it goes...

Love/hate Sunday

Love: I have time to blog today.

Hate: It is because I am at work.

Love: I am super duper caught up at work in anticipation of the next few weeks of spotty attendance.

Hate: I have coffee breath due to many coffees.

Love: Taking dos small people--mainly mine--out and about by myself lately has been really quite easy and peaceful. I think it is because they are older and less feral.

Hate: When my jeans get stretched out.

Love: This means they're not pinchy, and pinchy pants blow.

Hate: Our couch. I think it is loosing its poof and support, although, the frame is still good. Can cushions be replaced using the same outsides?

Love: Our new dishwasher!

Hate: Son of BISCUIT, do you know how expensive new refrigerators are? We eyeballed them when we picked out our dishwasher thinking of maaayyyybe getting one as well--and no. Even a moderately large, white one was $1200. No bueno.

Love: I just helped a student find something she didn't think existed. I am a supa star. And she was appreciative.

Hate: Sometimes students are not appreciative, but that's life, I guess.

Love + a confession so please do not judge or, if you do, do it quietly: Up until recently, Ezra still had much paci love and, frankly, I didn't much care. But I decided that he seemed mostly tied to them out of habit rather than comfort and perhaps it was Time. (He hasn't had one at school for almost two years.) Without consulting T, I thought perhaps turning four was a good segue into cutting the cord. I broached it with Ezra pitching it as, "Four makes you officially a big boy with a big boy party and maybe getting a big boy bike. Big boys usually say 'no, thank you' to pacis. What do you think?" He voluntarily pitched two of his four on Saturday (yes, we had many in bed--check this out for an example). This morning, Ezra tossed the remaining two into the trash. !!!!  I then went back in and retrieved/washed one and super sleuth stashed it in case lone wolf bedtime sans paci bites T in biscuits come 7:30pm.  I am super proud of Ezra and we made a very big deal about it.

Hate: Why does parenting require so much bribing/angling/stashing/duplicity? Man. I could be in the CIA after this.



What are you loving and hating this fine March day?

Off the reservation

Sometimes I wouldn't mind being crazier. And not like, "Haha, you so crazy!" But like "Holy snakes. Homegirl has SNAPPED." 

And I'm not thinking anything super harmful or newsworthy, but you know, outside of my comfort zone to just spread my wings and get reactions out of people and be silly and perhaps say things I've alllllways wanted to say and just pretty much act like a damn fool.

For example:

• Wear fake eyelashes and glittery eyeshadow to work just because I happen to think eyelashes and glitter are freaking awesome. Because I do.
• Point-blank tell that one particular student, "You are a douche and not terribly bright."
• Tell that other particular student, "Bitch, you don't know me."
• Wear a cape
• Skip when I want to skip
• Honk my car horn even more than I honk it now
• Kick someone in the shins when they deserve it and then just walk away
• Leave a $50.00 cash tip in the jar at my favorite Starbucks
• Give more hugs
• Punch someone in the ear when they are being mean to someone I love

That sort of thing.

I mean, boundaries and impulse control are good things--but damn if I don't sometimes just want to check them at the door. Right? Tell me I'm not alone here.

Because this got stuck in my head

The very fabulous Allison and I share a love of chicken pot pies--both real and from David Cross.

Love/hate Friday

Love: Well, it appears that all of you trust that I'm not blowing wind up your skirts when I say things. This is good.

Hate: I hope (sincerely!) (heh) that that post did not appear as me fishing for whatnot. Because gah. What a douchewaffle thing to do.

Love: I am wearing this shirt and like the way it fits.  

Hate: It does not come in white. Weasels.

Love: When Ezra refers to Saturday and Sunday as "Stay at Home Days." As in, "Mama, it's a Stay at Home Day today?!" And if it is, he's sooooo excited and it makes me laugh because, dude, how hard can playing and eating and coloring and doing fun science-y things at school be? 

Hate: I would like some cake and I do not currently possess any cake.

Love: I have plans to procure some cake this weekend. Holla.

Hate: I have an oily face.

Love: This is really only an issue now because last week it was 42 degrees and all this week and well into next week it is now 77 degrees.  

Hate: I once complained about not being able to find long-sleeve shirts for Iris and eschewed all the short sleeve ones available. Guess what I did yesterday on my lunch break given this new warm weather? BOUGHT SHORT SLEEVED SHIRTS. 

Love: Son of a biscuit, little girl clothes are cute. And little boy polos.

Hate: My skin, and I don't even really know why, wigged the HECK OUT last week. It was bad news bears, guys. I can't even tell you. It hasn't gone that off the grid in a looooong time.

Love: After copious measures involving new potions, things are returning to a somewhat normal acceptable state. But damn if it wasn't bleak for awhile.

Hate: Broccoli

Love: Iris has lots of new words and a fervent and heightened love of climbing and Winnie the Pooh.

Hate: Technically, still a good sleeper because once she's out she's o.u.t.--she has been giving the initial placement in her crib the middle finger. And some tears. And some calling out for me, T, and her grandma and her grandpa (jointly called "Baba"). At almost two and a half we feel confident letting her squirrel it out for awhile, but it's still hard to hear.

Love: I'll go in and re-situate her after a bit of time and she conks right out. 

Hate: When warm milk gets that weird-o skin on top. That is so very skeevy.

Love: It is sunny and not breezy and warm today.

Hate: Wind. Wind makes me angry.

Love: T and I have a daydate planned on Monday.




What are you loving and hating?

Genuine

There is a lot of "Thinking of you"s and "Hugs!" and "I'm so sorry"s and whatnot that float around between people both online and in real life. Sometimes what worries me is that among all of these possible platitudes is that people will think that I am not genuine. 

Here's the thing: if I say something made me gasp out loud in my office, it's because it did. If I read a post of yours and leave a comment saying that it gave me chills or brought tears to my eyes, it's because it did. When I tell you that I consider you a friend, it's because I do and not having met face-to-face doesn't make that friendship any less important to me. At all. If I tell you that I want to give you a hug and make you cookies because I'm sorry what you're going through, it's because I want to. 

I may not be the most assertive person in the world, but I don't say things I don't mean. Ever.

They are different, they are delightful

Ezra is sensitive to all things loud and ominous and remotely high energy; preferring calm and quiet. Iris doesn't even flinch when the environment is rowdy and a movie is thrilling.

Iris has black hair. Ezra's is brown.

Ezra has my eyes. Iris has T's.

Iris has a throaty voice and laugh. Ezra's still sounds baby-like and sweet.

Ezra will undoubtedly need a 15 step plan to rid him of the paci before college. Iris has not taken one since before her heart surgery almost two years ago.

Iris will stare you down and shout at you if there is general suspicion or suspected injustice.  Ezra looks personally injured and woeful and uses his words to rectify the situation.

Ezra loves snuggles and hugs. Iris prefers smooches.

Iris loves to climb and manuever and lift whatever she thinks she possibly can (she is very pro-Feats of Strength).  Ezra is not a fan of climbing, but surprised his teachers by being able to skip when he was only two.

Ezra loves and will try almost all foods. Iris is extremely wary of anything edible.

Iris thinks naps at home are for suckers, and naps at school are for winners. Ezra loves to nap at home and rarely naps at school.

Ezra does not like when the wind blows him the face. Iris puts her face directly in the wind and opens her mouth.

Ezra wants to be the first one to see Iris in the morning.
Iris shouts "Ehhh-RAAA!" when she sees him after waking up.

They are each other's biggest fans.

Holding

There are some things that I want to hold onto:

Seeing T for the first time on our wedding day. The moment of gratefulness and tears upon discovering we were pregnant with Ezra. The searing anger I had in the weeks after delivering Iris. The day I picked up Noah's ashes from the funeral home. The contentedness I felt the morning of Iris' heart surgery and the despair I felt nine hours later. The elation of finally getting a date for her discharge to come home. 

Those are some of my highest highs and lowest lows. And as time goes by, a part of me gets worried that they will get lost in the daily whatnot.

I want to hold onto everything, blessed and horrific. I don't want to become complacent with what we've been given and what we've lost. I want to make sure parts of me always remember everything, and that those times don't get pushed aside by new highs and new lows. 

I just want to put it all in a basket and hold that basket tight; making sure that everyone knows that that is why I am the way I am.

Nonsense that makes me laugh

Love/hate Monday

Love: I bought fancy file folders for my office and brought in my label maker from home to make them even snazzier.

Hate: This week at work is going to kind of suck a little bit each day. 

Love: The suck is mostly restricted to Workplace ridiculousness which I would GLADLY take over Home ridiculousness. 

Hate: The laundry list of items that I want to eat. It's quite exhaustive.

Love: My uterus must have cut me some sort of back-alley deal because quite suddenly it's acting as it should. I don't even know.

Hate: Being suspicious of people.

Love: Knowing who my friends are.

Hate: All of my winter socks are pinchy and scratchy and I want to burn them.

Love: The thought of springy new clothes for wearing.

Hate: Iris needs some bigger long sleeve shirts and THERE ARE PRACTICALLY NONE ANYWHERE.  This happened last year to Ezra when he had a growth spurt in February and needed allllll new pants and it was balls hard to find any. What the heck Carter's, Baby Gap and Gymboree?

Love: I no longer work Friday evening Reference at work. This is so very nice as  it makes my weekend seem that much longer and I am much less tired come Saturday morning.

Hate: Ezra is still waking up early-ish (6:30am) but is content to be brought into our room for snuggling until 7:00 or 7:30am.

Love: Iris is no longer coughing at all. The sass?--oh, it is back. Along with a bunch of new words including "Ohhh, maaaan!" and "People!" (while throwing up her fist which makes her look like a mini union leader).

Hate: I have some nervous tummy action about the feeding clinic and all of it is associated with it being New to Us. I shall share more later.

Love: Last night I had a chicken plank from the LJS and, CRIPE!, do they know how to batter a piece of chicken. The Colonel doesn't have jack on them.

Hate: That tasty goodness comes at a price. 

Love: SPRING


What are you loving and hating?

Shenanigans

Our camera is atrocious as are my picture taking skills (in case you hadn't yet noticed...) but I busted the camera out the other night while the fish sticks were cookin'.

Speaking of which, how do you feel about tartar sauce? My love for the stuff knows no bounds. Ezra is the same way. I totally get how it might heeb people out, except that I love it so very much. 

Anyway...pictures.

I don't even know what's happening here.

Iris ignoring her hambone brother.

Mr. Potato Head puts Iris in a trance. 

Hello? Is it me you're looking for?

She calls him "TAYYYY-TOOOE!" All caps.

Reunited and it feels so good.

Boys. Lordy.

My favorite little faces